Tag Archives: advocacy

Old me, new me, changed me

August 23rd, 2019

Like most teen girls, I tried on different personal styles and borrowed cool things to say from books and television. Some just felt right and I kept them while others seemed jarring, even to me.  I learned what fit and even more, what made me feel more confident and easy in myself.  I looked around for role models too.  I was drawn to my best friend’s mother, an artist who was tall and slender, gracious and thoughtful.  She had created a home that was filled with unique and beautiful things.  Their family dinners were plated in a way that we see on Instagram today, not for effect, but because she found beauty in it.  I wanted to absorb all of it through my pores, taking it in, making it mine.

Over the years, I borrowed from many other women, learning through re-creation.  Sometimes it was personal (clothing, hairstyles) but more often it was learning a new way of moving through life.  I thought I was pretty happy with that version of me.  Then I had my son.

My son needed an advocate, a persistent, smart, untiring mom who knew how to collaborate but hold the line.  He needed a different version of me.  Not the gracious, trusting one but one that could take the bull by the horns for him.

I found myself doing what I had done as a teen girl:  grabbing a turn of phrase here, an emotional or intellectual approach there.  I had an uphill learning curve to reach a better understanding of mental health issues in children, what care was available (or not) and how to access it.  But more than that, I knew I needed to appear confident, determined and strong.

I soaked up the language I heard from national leaders like Barbara Huff on how important families were to the healing and success of their children.  I listened to parent leaders giving workshops on special education or finding resources and noted how they emphasized the importance of smart, savvy parents (and modeled it).  I absorbed stories of IEP successes and insurance showdowns, where the parent simply didn’t care how many people were naysayers and plowed ahead.

I also had a friend, whose son had Asperger’s, who was famous for not taking any hooey.  Once, when she brought her son to his first meeting with a therapist, the therapist took her aside for a private word.  He said, “I am a mandated reporter.  If your son tells me anything during our session that worries me, I will be required to report it.”  Without blinking an eye, she replied, “Likewise, if my son reports anything to me on the ride home that worries me, I too will be required to report it.” When she told me this story, I burst out laughing.  After I was done, I made a mental note not to placate my son’s team ever again.  Instead, I would be direct and clear.  By the way, my friend went on to have a strong relationship with her son’s therapist.

It wasn’t easy work.  I didn’t start out not caring what others thought of me and it was uncomfortable challenging people I often liked and respected.  But going along and believing that things would work out didn’t lead to the care, school services or service slots my son needed.  While I always knew that squeaky wheels get more attention, I really didn’t plan to become loud and squeaky. But advocacy demands it sometimes.

When I was a few years into the strategic-warrior version of me, I found that other parents, especially other mothers, were grabbing my phrases and approaches and running with them.  I would talk about what I said at a team meeting or how I politely but adamantly disagreed with a therapist and someone would remark, “I didn’t think you could say that out loud. I’ve always bitten my tongue.”  Once, when my son, then a teen, was hospitalized (temporarily, they said) on an adult unit, I called my insurer and ask for him to be transferred.  I pointed out that when he was in group therapy on the unit floor, the next youngest person was 41.  My insurer hemmed and hawed and I insisted.  They said that approval would take time.  I insisted.  They pulled out a series of reasons why this wasn’t doable.  I insisted and they found him a new bed on an adolescent unit.  I’d tell this story and other parents would say, “How did you phrase that?”  Then they would try it out for themselves.

At the start of my son’s mental health problems, I would jokingly ask his therapist for a handbook, so I could look on page 57 and figure out how to handle school refusal or on page 123 and follow the instructions for a meltdown.  What I didn’t say was that a I also needed a handbook to reconfigure myself, so I could learn to take the hits, roll with the punches and come up with a brilliant move or two.  Of course, neither handbook exists but I had living, breathing examples in other parents who had forged their way before me.  I will always be grateful to them.

We all know that life happens and it changes us.  But we change ourselves, too.  I thought I was done when I was a teen and young adult, drawing on the examples of other women.  Then I thought that I was creating the almost-final version of me when I needed to become an uber-advocate for my son.  However, I keep finding wonderful traits and points of view that intrigue and amaze me.  I muse to myself, “What if I tried that out?”  And sometimes I still do.

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Authentically me. Just not the old me.

May 27th, 2019

When I was a teen girl and trying on different personal styles and demeanors, I admired my best friend’s mother extravagantly.  She was an artist, tall and slender, gracious and thoughtful.  Their family dinners were beautifully plated and elegantly presented (before that was a “thing”) and their home was filled with artistic and unique objects.  I wanted to absorb all of it through my pores and become more like her. That’s who I’m going to be like, I would tell myself.

I grew into my later teens and young adulthood, borrowing from many styles and ways of moving through life.  I would read about women who made a difference, who created worlds through their writing or, through their art, changed how we saw things.  I would grab a little of this and that and make it mine.  I thought I was pretty happy with this version of me.

Then I had my son.

My son needed an advocate, a persistent, smart, untiring mom who knew how to collaborate but hold the line.  The me I had carefully crafted didn’t really match his needs.  He needed a different version of me.

I found myself doing what I had done as a teen girl – grabbing a turn of phrase here, an emotional or intellectual approach there.    I looked around for new role models.  I would watch a veteran parent do a training on special education and note that she wore serious but casual clothes in somber colors, unlike my pastels. “Do they take her more seriously at school meetings?” I wondered. I listened to national parent leaders who challenged others to stop using adult language to describe children like my son.  Even better, they insisted that we all stop using words that blamed or disrespected parents. I watched amazing parents stand in front of a crowded room and tell their story and cry and rant and cajole and pull the crowd along with them.  They put on full display feelings that I was feeling too, but shied away from showing in public.  I listened to champions for children’s mental health who were pushing the state systems they worked within to make changes; they were the insider advocates, feisty one day and implacable the next.

I found out an important thing from trying on – often silently – the characteristics I knew could serve the new me.  It has to be authentically you, even though it’s not the old you.

Self-help books will tell you that to change yourself you have to change your life.  If you change a habit, like going to the gym or saving money, you can then change yourself.  You go from being a person who doesn’t exercise or save your money to one that does.  The change happens from the outside in.

Just the opposite happened for me.  My life changed whether I liked it or not.  It certainly wasn’t deliberate or selective. My son was an almost-typical little boy and in a very short time turned into a boy who had meltdowns, panic attacks, regular nightmares and talked about dying.  I was the same person inside except I was freaked out a lot of time, full of self-doubt and overwhelmed.  And suddenly ineffective.

The deliberate self-help model also incorporates the luxury of trying again and again.  If you don’t go to the gym this month, maybe next month you can take up running or yoga.  I usually felt that I didn’t have that luxury.  If something didn’t work, I was making mental changes on the way home.  Sometimes I was tossing out the old, even as I walked out the door from a meeting about my son. I went back to my teenage ways and tried on different characteristics and at times, personas.  I was firm, I was persistent and often, much tougher.  When I didn’t have it in me, I simply channeled those veteran parents I had watched and listened to.

After a few years, I became the parent leader others viewed as a model for themselves.  Once, when I was leading a support group, other parents asked how my special education meeting had gone that week.  My school district had agreed to an outside placement with the entire team, then had secretively started sending packets to inside programs.  I wrote a few emails pointing out that this was flouting special education law and copied several people up the chain.  At the next meeting, I steeled myself to not smile, not to nod and be aloof and formal, which was something I could not have pulled off just a few years earlier. I channeled a tougher, stronger version of me. When the special education person smiled at me, I remained unsmiling.  When she leaned across to touch my hand, I pulled it slightly back.  When she asked if there was something wrong, I told her, knowing she had read the emails and had a pretty decent idea of my concerns.

I looked her firmly in the eye and said, “My son needs us all to stay with the agreement for placement.  I am counting on you and so is he.”  When I told this story, one of the parents at the support group listened and said, “I didn’t know you could talk like that at a school meeting.”  She took it and ran with it, however, becoming a firm, serious, unemotional, strong parent at her daughter’s next school meeting.  We both got the services our children needed.

Sometimes I still miss the old me, the one I crafted so carefully.  She saw the world as a kinder one and was more patient in waiting for things to change.  Then I think of those veteran parents who insisted on respect for parents and to take them seriously.  I remember the ones who laid their stories, their sorrow and hope, out in full view, believing their stories would power change.  And I consider the old me and whisper, “Nah.  I’m good.”

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Phone calls, phantom panels and advocacy

May 7th, 2017

The sign on the door said “closed” but did not explain. Further investigation revealed three clinics under the same management were closed by the court at a bankruptcy hearing. As any parent of a child with mental health problems knows, finding a child psychiatrist or clinical nurse is not an easy task. The need for a new therapist as well makes the task even more daunting.  

Cheryl started exactly where she was supposed to start, with a call to their insurance company. “Let us do a search” said the representative. Unfortunately the names they gave her were dead ends due to the doctor not accepting new patients, no longer working there, etc. So when she called the insurance company back with that information they said again “Let us do a search.” This process was repeated more times than Cheryl could count. With each search the options would be further away from her home.  She told the customer service representative “As long as I don’t have to hop a plane, I’m fine.” Still no luck. The insurance company’s list of providers seemed to be what is sometimes referred to as a “phantom panel,” names on a list that are not connected to an actual, available doctor or provider.

Six months after the clinic closed, Cheryl’s son still did not have services and his pediatrician said she was no longer comfortable prescribing his medications. The insurance company was not budging in expanding their panel because they said their panel was big enough. What had become an exercise in futility was fast becoming an emergency.

Cheryl reached out to me for support and guidance. First, I referred Cheryl to the local Family Resource Center. I knew they had the ability to do an expedited referral to an area clinic that was not in her network. Then one morning, coffee in hand, we sat at her kitchen table and called her insurance company. When they told Cheryl they would do another search, I got on the phone. I explained who I was and that Cheryl’s son needed an out of network provider approved. We explained that this had been going on for six months, that Cheryl had done her due diligence by calling all the names provided to her and that no one was available. I was able to explain the larger context:- that three clinics had closed leaving lots of people without services and a limited pool of potential providers more stressed than before. I also explained this child was a DMH client with serious mental health concerns and numerous hospitalizations. That he had not had a hospitalization in a couple of years probably at least in part due to the careful combination of services that he had been receiving. Further, that he had recently been showing signs of decline.

I then said receiving comprehensive mental health treatment was in fact medically necessary and that it was obvious that their in-network panel was not sufficient, at least not in this area at this time. I requested an out of network level of benefits be authorized. The representative was very receptive and took the necessary steps that resulted in a “single case agreement” being approved.

Parents often comment about how hard it can be to navigate through this confusing system. So often they say “I feel bad for people who don’t have the support.”  Cheryl says “I just kept asking for help but– I didn’t know all the right words to use.” This was coming from a parent who is a great advocate for her child. During the previous 6 months she talked to DMH, called doctors who were not on the list, tracked down the old doctor for advice and even talked to the newspapers, still she needed support.

Cheryl called me recently and gave me some news. The psychiatrist her son has been seeing now for over a year is leaving the clinic and they have not been able to find a replacement. They are recommending she start looking elsewhere. After telling me and the DMH worker she started where she knew she had to start, the insurance company. Once again she made that call.  “Let us do a search,” said the representative.

Nancy Collier is a Family Support Specialist in the Lowell Area. She was involved in advocating for mental health parity legislation in Massachusetts.

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Everyone needs a posse of parent warriors

April 23rd, 2017

Somehow, you can never escape the influence of your mother.  Yet, sometimes you don’t see it for a long while, especially if it shows up in a different context.  Often, in fact, both the influencing and not-seeing can be a very good thing.

My mother believed in the solace and wisdom of other women, especially other mothers.  She grew up in a generation where woman shared secrets-that-weren’t-secrets only with each other, like whether you colored or permed your hair.  Women always went to the ladies room in twos or more in public places and spoke in low voices about “women’s problems.”  She had a group of women friends, kind of a posse, who knew each other for a long time.  Among this group, if there were child-rearing, marital, drinking, health or other issues, those too were shared and kept quiet about.  Besides this group, her sisters were her most precious resource, keeping family connections and, sometimes family secrets, intact.

Although I thought it was silly and even wrong, this secret keeping cast its shadow for a long while.  I was uncomfortable talking about things that were personal, claiming that respect for privacy was the only thing that motivated me.  Once, I came down to breakfast in my college dorm, to find two friends arguing hotly about the merits of Clairol versus L’Oreal hair color.  I put down my food and was quiet for a while, not joining in, not knowing why.

But I believed in the importance of a posse, a group that you could trust and seek out for their knowledge and comfort.  I believed in the value of other mothers.

Then my older son got sick.  He was only in first grade when we emotionally fell off a cliff.  He went from being an anxious child to one who was hurting himself in a few short months.  There was no mistaking that we were the family dealing with significant mental health issues.  Some of my friends drifted away, others stayed but were bewildered.  Still others offered help, advice, a listening ear and most of all the knowledge that whatever I shared, our privacy would be respected.  I found I needed that, because it gave me some space to try and understand how my life was changing and search for a new equilibrium.  It wasn’t secret keeping exactly, but my close friends closed ranks and I felt a little safer, more protected.

I needed that feeling of safety, trust and comfort the first couple of years of my son’s illness.  Like many parents whose children have mental health issues, my life often felt like it was in freefall.  If we planned an outing, it was tentative, making sure my son was okay minutes before we left, so that he could manage without being overwhelmed.  If not, we changed our plans. Heck, if I planned a meal, I never quite knew if we could make it through the entire thing or if there would be a meltdown.  Uncertainty became my daily companion.  Sometimes there were good stretches but there were lots of time when the school would call, his meds would suddenly stop working or he’d develop new fears, obsessions or even frightening behaviors.  I alternated between changing my battle plan to throwing my hands up in surrender.  There were few spaces where I felt like someone had my back.

Then one day came when I started talking about my son’s struggles as well as my own experiences complete with triumphs and disasters.  First I talked at a support group I attended and later in a support group I ran.  Other parents commiserated, cheered me on and never judged.  We would often continue our conversations in the parking lot, treasuring the sharing.  One mom, Theresa, had a son with a mood disorder, who was also using substances.  He was unpredictable and sometimes stole cash from her wallet.  She’d been widowed a few years before, about the same time her son began showing symptoms of bipolar disorder.  Her family thought she’d indulged him too much after losing his dad and that she should have thrown off her own grief earlier.  Theresa would come into the group and pour out her heart and her shoulders would relax, her face would open up and she’d feel the power of the posse. Dave, whose son had ADHD and was going through a difficult divorce, would come week after week, not saying much, but listening hard, nodding often and brought little bakery gifts.  It was his posse, too.

Motivational speaker Jim Rohn says, “You are the average of the five people you spend the most time with.”  Sometimes that’s family, but often it’s your group of friends. Your posse can have a big influence on how you feel, what you think and even what steps you take.  The people in it can support you and believe in you, but they can also shake their heads at you and nudge you in a different direction.  It’s not a rubber stamp, letting you off the hook.

Today my posse is filled with parent warriors.  They are advocates and influencers, passionate and strong.  They give me support, challenge me and believe that we can make a difference in children’s mental health for our families and lots of others.  I believe in them, too, and am sure they are right.

My son is an adult now, still dealing (mostly successfully) with his mental health symptoms and he’s doing okay.  But that wouldn’t be true without years of advocacy on my part and the part of others.  I wouldn’t have been able to push, to share my stories publicly and keep going without my posse of parent warriors.  Nobody does this alone.  My mom was right about that.

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Why hope will never be silent

April 10th, 2017

Harvey Milk once said “Hope will never be silent.” That quote has been an essential quote for me since the ninth grade.   As long as we keep hope in our hearts, we can never be silenced, and we can prevail.

This quote means so much due to the relevance to what I want to accomplish in my life and my future career path. This quote is also relevant to the world we live in today, and to all of the people advocating for the rights they deserve. Hope plays a huge part in our society, and we can’t just give up on the concept. If we all simply gave up hope, what would we have left? We would have total destruction, and tears in the eyes of the ones we love the most. We’d have a complete lack of progress, and more pain than we could ever begin to handle.

When I think of the word “hope” and all of the people I know who embody it, I also think of the word “fighter.” Fighters not only have hope in their heart, but they advocate for the causes they truly believe in, and fight against the things that take away from their cause. I like to hold the belief that I am a fighter. I’ve been through my fair share of tough times and challenges in my life, but in total honesty, I simply want to use my lived experience to help those who are going through similar struggles in their lives. No one should have to fight these demons alone, and that is why I want to be involved in the mental health field,

Trying to stay positive is a hard thing to do, but I really try to do just that. Even if at times staying positive seems impossible, it is vital because all negativity does is drag us down. For me, my friends play a huge part in my positivity. Almost all of my friends have been diagnosed with a mental health “disorder.” I put quotes around disorder because although these are not “normal” for a brain, they still play a part in who we are, even though that’s not all there is to it. The people who have taught me the most about hope are the ones who have these disorders. They’ve taught me about resilience.

I know in my heart that I am the fighter I am because of the friends I have gotten the pleasure of knowing. I not only fight for myself, but I fight for all of the people I love who have taught me that everyone has something to say. Sometimes they simply need help to say it. Giving everyone the chance to speak up on issues they believe in is important. Listen to the hopes and dreams of others, because hope is vital to societal growth.

No matter how grim a situation may seem, you can find hope not only within yourself, but in others as well. No one is incapable of having hope in their soul. Sometimes they just need a helping hand to guide them. So, in honor of Harvey Milk, remember “Hope will never be silent” and we as a human race can never be silenced.

Rachel LaBrie is our guest blogger. Rachel dreams of being a young adult fiction writer. She currently has 6 animals who she truly adores. 

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